Face transplantation 10 years on…

Isabelle Dinoire

Isabelle Dinoire pictured in 2009

Hats off to Isabelle Dinoire! Ten years ago today, she signed the consent form to receive the world’s first face transplant – and I wished her well three days later when she appeared in front of a massive press conference – and I wish her well again today.

She deserves the gratitude of people with severe facial disfigurements because she was willing to take what the Royal College of Surgeons’ Working Party in November of the following year called ‘a leap into the dark’.

Of course, not that many people have been willing to take such a leap but around thirty have done so worldwide. Some of the transplants have been immense undertakings involving skin, bone, muscle and much more. Sadly, some patients have died – one at least because they failed to conform to the immune-suppressant drug regime; others probably because the graft has failed.

But most patients survive – and some have told their stories in graphic detail expressing gratitude to the donors’ families and the surgical teams – see the New York Times and The New Yorker in 2012, for example, and this week’s interview on BBC Newsnight and this from a Polish man.

Ten years on, I think several things are clear:

First, that face transplantation is still in its research phase but is proving itself as a very effective method in the surgeon’s armoury for dealing with the functional and aesthetic issues posed by severe facial disfigurements from traumatic and other causes.

Second, that the very complex and highly individualistic challenges of preventing graft rejection and designing effective immune-suppressant drug regimens are being tackled – but there is little public knowledge about patients’ experiences.

Third, that the psychological and social benefits have been well-expressed by those who have gone public – but I continue to be concerned about the quantity and quality of the pre- and post-transplant psycho-social support to both the patient and their family.

Fourth, patients can take on another’s face but their sense of identity is not easily regained – as Isabelle herself expressed in 2008: “It’s not hers, it’s not mine, it’s somebody else’s… Before the operation, I expected my new face would look like me but it turned out after the operation that it was half me and half her… It takes an awful lot of time to get used to someone else’s face. It’s a peculiar type of transplant.”

Fifth, whilst some donors’ families have been willing to go public, I worry that donor family support and privacy have not been given as much attention as they merit.

And sixth, and finally, the media coverage has raised public awareness that face transplantation is a remarkable procedure that can offer improved appearance and functioning for people with severe facial disfigurements – but it is not a magic wand.

In the month after Isabelle Dinoire’s leap-taking, I wrote to the president of the Royal College of Surgeons of England to ask that he and the RCS Working Party update its 2003 report on face transplantation (which had been very hesitant). Last night I re-read the outstanding 2006 report and marvelled at its wisdom – it is the most informed public document about face transplantation and established the highest ethical benchmark for British research teams.

One of my concerns as face transplantation becomes a frequently-used procedure in the next decade is that inexperienced clinical teams will ‘have a go’ – and I think there is a risk that the learning by research teams is not being shared as widely and fully as it could be. I am going to write to Clare Marx, the current President of the Royal College and to her counterparts in the US, France and possibly other countries to suggest that they combine to commission an international review.

But let me repeat: Hats off to you, Isabelle! I shall raise a glass to you this evening!

Events in Paris and London today

My heart and prayers go out to everyone in France who are trying to come to terms with last night’s ghastly events in Paris. We at Changing Faces are ready to do anything we can to help those injured and their families and we are with all people who stand for freedom and democracy.

Today, I will be in north London marking 40 years of an amazing service which has its roots in the aftermath of the fight against tyranny and barbarism in the Second World War, and so want to assert strongly that from these atrocities can come seeds of good.

The Skin Camouflage Service was created by the British Red Cross at the request of the Department of Health in 1975. In 1975, a nationwide survey of dermatologists highlighted the psychological and social effect of disfiguring skin conditions. The survey found that, while few skin problems are life-threatening, visible conditions – such as vitiligo, rosacea and scarring – could cause great distress and adversely affect almost every aspect of a person’s life.

Joyce Allsworth was appointed to develop the training – and Joyce was a pioneer in skin camouflage because she had been working with companies like Veil, Covermark, Max Factor and Elizabeth Arden in the 1950s and 60s, and they had been inspired, at least in part it is likely, by Sir Archibald McIndoe, the great plastic surgeon at Queen Victoria Hospital, East Grinstead. The patients he treated in the wake of the Battle of Britain and subsequent warfare came to be known as McIndoe’s Guinea Pigs.

Today the Skin Camouflage Service is an integral part of what Changing Faces offers to help people with any kind of disfigurement – from birthmarks, skin conditions, burns or scarring from accidents and violence – to gain self-confidence and self-esteem.

 

Around 5,000 people a year are referred to the service by dermatologists, GPs, plastic surgeons and others – and are advised by our highly-skilled Skin Camouflage Practitioners about the best cream to use – from 150 options on the NHS prescription list – according to their skin colour, type etc and how to apply it. They can then get a GP to prescribe the product – and the feedback we get is that this can be life-changing for many people. You can find out a lot more on our website.

My hope is that this little bit of history can light a tiny ember of hope into the gloom that last night’s events will inevitably produce.